My Top 5 Weirdest MS Symtpoms

I want to talk about weird MS symptoms, even though it makes me -- an avowed hypochondriac -- a little nervous. Whaaaat? Here's why: in my mind, someone is going to look at my list of weird symptoms and say, "WAIT, Ms. CrankyPants! That's not MS you're describing! Those are all symptoms of [insert hideous, fatal disease here]." And it won't matter a whit that whoever makes this proclamation isn't a doctor, hasn't seen my MRIs or other tests, and could be drunk and/or mentally unstable. Nope! I'll immediately begin worrying that this know-it-all is right, as I've secretly nurtured a fear that I've been misdiagnosed this whole time. Yep, since 2005. Irrational? Indeed!

But I am going to do it anyway, because [insert wobbly voice] if there's a chance I can help one, just ONE, person [orchestra swelling] recognize a weird symptom they've been quietly freaking out about, then it'll be worth it. Okay, that's atcually kind of true, as cliche and embarrassing as it sounds. That's because it happened to me. There was a totally scary symptom I was having, and I didn't feel better about it until I read that it is something that can happen when you have MS. When I read that -- quite by accident; I was perusing this blog, in fact -- I literally sat at my desk and cried with relief. I'm not a big crier, so this was a big deal, but that's how much I'd been freaking out.

Onward, ho! Here are my Top 5 Weird MS Symptoms (and, YES, they're MS -- please, if you like me even a little bit, don't tell me they're also symptoms of something else). Oh, and you can't read further until I remind you that I am not a doctor, so obviously any of the things I talk about below are personal experiences and in no way constitute anything resembling actual professional medical advice:

1. One pupil bigger than the other. This earns the top spot on my list because this is the one that was so damn scary. I'd very recently had a bout of optic neuritis, which was affecting my right eye. Later, my neurologist explained the optic neuritis was why I had that !($&ing big pupil. But that talk didn't happen until a couple of months after I first noticed this freaky symptom. Until I knew it was related to MS, I was a mess. I vividly remember being in the mall one day and stopping at every other mirror to check my pupils. Yep, the right one was still bigger! Forget about being alone in a bathroom. There, I could examine my pupils for as long as I wanted, while imagining the horrible reasons for the different sizes. Even though I was in anguish, I was too scared to go to the doctor -- just in case he or she confirmed my worst fears. Irrational? Indeed! So it was by pure chance that I stumbled across a reference to this phenomenon in the blog I linked to above. The relief was overwhelming. Thank you, Julie Stachowiak. You'll never know it, but you took an enormous weight off my shoulders (and made me cry!).

2. Water dripping on me. This one is more annoying than scary. But I had about a week where I could swear water was dripping on me. The first few times, I looked up. Nope, not raining in my living room! The urge to wipe off the invisible "water" was irresistible. No amount of wiping helped. Drip, drip, drip. Then a long pause. Drip. It was so strange. That little gem hasn't returned.

3. Head zaps. Oh, this one sucked. I was out of town for work when the first zap happened. It was an intense, shooting, split-second pain in the back of my head. Naturally, I thought I had a brain tumor or an aneurysm. After conferring with my neurologist by phone, I went to the ER, where I got a CT scan (so if I didn't have a brain tumor then, just give it a few years what with the radiation and all). The scan showed nothing. But the head zaps became my buddy that week. I could count on one to happen every morning as soon as I stood up from bed. Next one: in the shower, right on schedule. The third? After breakfast. And on and on. When I finally got home, my neurologist ordered an MRI. It showed lots of new lesions, and bloodwork indicated very low levels of Vitamin D. A course of steroids and some mega, prescription-level doses of Vitamin D nipped the zaps in the bud. They've come back a couple of times, but only once or twice, and never for a week. Thank God.

4. Muffled hearing. In the midst of the gross heatwave we're experiencing on the East Coast this week, I've noticed this one recently. If go outside in the heat, when I come back indoors my hearing is muffled -- as if I were underwater. It takes about 10 minutes in the air conditioning for my ever-so-keen hearing to return to normal ("Captain Nap?! Are you vomiting in there?").

"It was Squeaky."

5. Skin burning. This has happened only once, but it was fairly unpleasant. Whenever I brushed against something, or someone touched me, my skin felt as if it were on fire. The sensation lasted only seconds, but it was enough for me to leap away in horror when someone seemed to be entering the Radius of Fire.

So there you have it. Of course, I've had the gamut of more "normal" MS symptoms: drop foot, the MS "hug," fatigue, numbness, memory problems, the need to be always near a bathroom, cellulite*...MS really is the gift that keeps on giving.

Stay cool!

Ms. C-P

*Ignore what I said earlier about not being a medical professional. I've changed my mind, and I've determined that MS causes cellulite.

Who Decided WORKING Was a Good Idea?

Holy crap, going from no work to a full workweek has been a rough adjustment. It's been two weeks now and yesterday was the first day I didn't come home and collapse on the bed in a quivering heap. (The absence of end-of-day-quivering-heapness MAY have something to do with the fact that I exercised for the first time in two weeks yesterday (Friday) morning, but I'm not going to give this "exercise" business too much credit until I can detect a pattern, regardless of what "experts," "doctors," and "pretty much everyone on the planet" say.)

How to explain this recent overwhelming fatigue? I have various theories:

1. I am dying (naturally, this one tops the list)
2. I have a Vitamin D deficiency
3. I have MS and the stress of the new job is triggering the fatigue
4. I am lazy and actually having to work overtaxes my frail mind and body 

Personally, I find (1) and (4) pretty compelling. HOWEVER, I have an MRI and appointment with my neurologist in July, so we will soon see if my MS is flaring up in protest of this new schedule. In the meantime, I also will be exercising and am very hopeful that unrooting myself from the areas where I like to be planted (couch/other couch/bed) will increase my energy. It's annoying, really, that when you are super tired and cranky, and the very notion of exercise is hideous -- that's when you should do it. And, yes, you quite likely will feel much better and be glad you did. It's the getting-there part that sucks.

Take Friday morning, for example. You'll recall, this was my First Morning of Exercise. I had woken up early and shuffled downstairs to install myself in my pre-work, fetal position on the couch (not to be confused with my post-work, fetal position in bed, which features the cats on either side of me). It was 6:30 am. The night before, my husband and I had decided that we were going to WORK OUT the next morning, by gum, and if I were to get to work on time, we needed to start by 6:45. 

I was being extra quiet, hoping that my still-in-bed husband wouldn't hear me breathing, wake up, and come vaulting downstairs so we could begin our workout. I was keeping a beady eye on the clock. 6:35 and all was quiet from upstairs. 6:40, still quiet. I had a slight pang of guilt; should I wake him up? No, no, what if he'd had a bad night's sleep and needed the rest? Waking him would be hugely inconsiderate. (Note that at no time did I seriously consider working out by myself, which I could have done quite easily.) 6:42...yes! He was going to miss the deadline and then I could say, "Oh, shoot! I don't have time! We'll work out tomorrow morning." 6:43...what was that?? I heard floorboards creaking. My beady eyes widened in alarm. The robust Capt. Nap was lolling on the carpet nearby, so I knew he wasn't the source of the creaking. It could mean only one thing: my husband was awake and on his way...unless he was too tired! Maybe he *had* slept poorly. I hastened upstairs where he was brushing his teeth. He looked disoriented and disheveled. Encouraging signs. 

"Aww, you look really tired," I murmured sympathetically. 

"Hskbkd houmnsgiyg yikbjkbtks!" he chirped through a mouthful of toothbrush. 

The fact that he was chirping was vexing. He was supposed to be tired, damnit! He finished brushing and announced that he was super happy that he had woken up in time for our inaugural workout. I looked at him balefully and trudged down to the basement to turn on our video-game console. Moments later he joined me and...we had fun. It was a short workout (after 10 minutes I was gasping embarrassingly), but it was a start. And you know what? I DID feel better that day. Maybe it's a coincidence, or maybe there's something to all that "science" and "endorphins" stuff. Whatever the case, I am going to try to make exercise a part of the morning routine. Maybe it can take the place of the fetal-position-on-the-couch bit. If exercise can help with the crushing fatigue, even a little, then it'll be worth it. (Also, at work there are these incredibly unflattering florescent lights in the bathroom and I caught sight of my upper arms the other day; OMG are they in need of serious toning. So if I can be a little less tired and a little less jiggly, I will be happy. Stay tuned!)

p.s. I missed you guys! 

"Poo Paws": Capt. Nap's Cure for Fatigue

Oh, Captain Nap.

"What?" 

This is Napoleon (of recent "Thank You for Vomiting, Napoleon" fame). He's saved the day again! You'll recall, I have him to thank for feeling too ill to eat a bag full of Butterfingers. This morning, he cured my fatigue! Clearly, this cat is an MS miracle waiting to be discovered by the medical community. Here's what happened:

I had just had my Dr. Swank-approved breakfast (the same as yesterday; I'm a creature of habit/too lazy to be creative at 7:30 a.m.) and went upstairs to do...something important, I'm sure. There was Capt. Nap, curled up on my bed, cute as can be. He stretched and rolled over upon seeing me, even letting out a small meow as if to say, "Hi! Come lie down for a sec. You look like you could use a rest." (I know that's a lot to interpret from a small meow, but you'll have to trust me on this.)

Because I didn't want to be rude, I hopped on top of the bed and curled up next to the good captain. As I was lying there, I began to notice a strange, unpleasant smell.

"Hmmm," I thought. "Could I have a brain tumor?"

How else to explain this out-of-nowhere smell? Let's check in with our friend Napoleon. He had begun flexing his paws in that adorable way cats have when they are super-content, and as I was about 1.2 millimeters from said paws, I noticed something on those charming little appendages. Something that looked like...POO. Yes, friends, Capt. Nap had "poo paws" (PPs).

Despite recent, published evidence to the contrary, Napoleon is not a disgusting cat. These incidents have been aberrations. He's really quite neat and tidy. The reason for this story is to illustrate how he cured my fatigue. See, I reared back from the PPs and seized (gently) the cat. I marched (carefully) downstairs and proceeded to wipe off the offending appendages, for which he was enormously grateful. I then stuffed the bedding, pillows, and clothes I was wearing straight into the washer. After all of this, my fatigue and any thoughts of napping had vanished. My little MS miracle cat, Napoleon! He doesn't know it, but he's helping me.

As for my diet (sorry for getting sidetracked), yesterday was another Day of Success!!!! In addition to the already-mentioned breakfast, I had 2 toasted crumpets with 4 teaspoons of peanut butter (Smuckers' all-natural variety, because it was the only one I could find that didn't have hydrogenated oils), plus a few random snacks, such as a banana and some grapes. For dinner, I tried Pistou, from the Swank Diet Book. Pistou, apparently, is the French version of pesto. It had, among other things, potato, carrots, onion, pasta, zucchini...all in all, another simple-to-make and tasty-to-eat dinner. The recipe made 8 servings, so we'll  be having that again tonight.

So far, today is shaping up to be Day 3 of successful dieting. For breakfast, you'll be astonished to learn, I had the SAME DAMN THING I had on Days 1 and 2. For lunch, well, 7 Triscuits and smoked salmon, plus, um, 2 toasted crumpets and peanut butter. At least I'm consistent. Dull, but consistent.

YOU Again! An Unwelcome "Friend" Pays a Visit

I'm sitting here browsing through the Swank Diet Book (SDB), deciding what to make for dinner. Well, that makes me sound more organized than I really am. In fact, I am noting all the ingredients I'll need to get at the store tonight after my husband gets home (my car battery died).

We've agreed, via text messages, on seafood. I've noted in the SDB many, ummm, interesting recipes, such as:

• Salmon Loaf II (yes, there is a Salmon Loaf I)
• Tuna Balls (hahahaha)
• Seafood Stroganoff

Okay, those don't sound so delicious, but there really are some promising recipes, and I've picked out ingredients to make Baked Fish au Chablis. It has French words in it -- surely a good sign! 

While thumbing through the SDB, I paused to read a section in the beginning of the book on fatigue. As Dr. Swank refers to it, an "old unwelcome 'friend.'" Darn tootin', Dr. S.! Fatigue is one of those delightful "invisible" symptoms. Whenever I say, "I'm too tired to do [fill in the blank]," I feel as if the person I say it to (usually my husband) will have a flash of irritation. 

"Oh, she's TIRED again. Sure. She hasn't done much today; why the hell is she tired?" he might think. 

Let me be clear: he's never said anything resembling that, or even made an exasperated face (at least, not while I'm looking). He's incredibly patient and kind. So it's probably my guilty conscience that fills my head with such worries. See, I remember when I wasn't tired so often; when we used to go hiking and out to parties -- sometimes staying out 'til the wee hours!  I worry that he'll eventually get sick of being with someone who's, well, sick. So that's a large part of the reason I decided to do this diet. I want to have more energy, remain mobile, feel enthusiastic again when he suggests going out on a Saturday night. I don't expect it to cure me, I just hope it will help me feel better. Lots better. And I'm most assuredly ready to make my relationship with that old unwelcome "friend" fatigue a lot less familiar. 

p.s. I'd be remiss in my duties as a hypochondriac if I didn't say that of COURSE I've suspected my fatigue is related to a lurking deadly disease. But just in case I'm among the 80% of MS patients who experience fatigue, I'll try to remain rational about it.  :)